Investigation of Sleep Disorders and Lung Injury in Marfan Syndrome
49:53-53:09
Q:
We often hear about the CPAP masks they're not comfortable, they don't fit well but that's what insurance provides for me. Do you have any recommendations for where else folks can, can look at masks and, and see what might be a better fit for their face?
「CPAPマスクの付け心地が良くないんだけど、保険会社から送られてくるマスクだからしょうがない」といったことを耳にすることが多いんですが、フィットするマスクを見つけるにはどうしたらいいのでしょうか。
A:
I have a couple of thoughts about that. First of all you should encounter your sleep person with the knowledge and you can say Dr. Neptune told you this that there are hundreds of these masks that are available. I mean it's not like you have kind of this one company that's making five masks and that those are the only one thing, so you first of all need to realize that there's a mask and a setup out there and it may be kind of a nose only system, it may be a full facial and there are all sorts of different ways of delivering kind of the positive pressure, the devices and the machines in terms of auto CPAP versus manual CPAP.
まず、睡眠専門医を受診して、「ネプチューン先生から聞きましたけど、CPAPマスクは数百種類あるそうじゃないですか」とお話しください。一つのメーカーが全てのマスクを作っているというわけではありませんので。CPAPマスクには、鼻のみのタイプやフルフェイスタイプなどがあります。装置のタイプもオートCPAPとマニュアルCPAPがあり、陽圧のかけ方にも様々な方式があります。
And what you have to do and I know and I, I, I know when I say this people are saying these doctors and these health systems are so resistant to giving you what you need and they want to give you what's easiest for them to deliver but the reality is that they're like, it's like a squeaky wheel, you will only get that if you tell them that they have these masks available and you want to try every possible mask that you can get until you find one that work.
患者さんの話では、希望に反して、医療側の都合に合わせたマスクなどが送られてくるとのことです。おっしゃることはわかりますが、本当に自分に合うマスクを見つけるには、「マスクは何種類もあるのだから、全てのマスクを試しに付けてみて、自分に合うものを選びたい」と、口うるさく訴え続けるしかないと思います。
And I say for patients who have Marfan syndrome who are having mask fit issues and there are many reasons that there are mask fit issues because the facial structure can be a little bit different in patients with Marfan syndrome than in persons who don't have it, that you should try at least five different mask before you say that it's not going to work. I would say 10 but start out with five and see what's going on because when you start saying, “I want to try different masks,” your sleep doctor will get into a different head because they realize that you understand the whole sleep system and that when he says there are only two masks that you and he'll realize he can't say that because that's actually not true, so start off with the understanding that you're probably going to have to test out a number of different masks.
マルファン症候群の患者さんでマスクが合わないという方では、多くの理由が考えられます。というのも、マルファンの患者さんでは、顔の構造が一般の方とは多少異なる可能性があるからです。私はマルファン患者さんには、上手くいかないとおっしゃる前に最低でも5種類のマスクを試してみてください、とお伝えします。できれば10種類と言いたいところですが、とりあえず5種類で始めて様子を見てください。医師に「形の違うマスクを色々試してみたいです」と言えば、医師も「この患者さんは睡眠についてきちんと理解している」と考えて「CPAPマスクは2種類しかないんですよ」などというウソは言わなくなります。ということで、いくつかのマスクを試すことになる、と考えて、CPAPを始めてみてください。
The second point is that there is a training period and the training period can be like a month or even a couple of months and when kids are starting on CPAP they start at lower pressures and it's gradually increased and now we become much more comfortable with using the same kind of approach with adults, so there's a way of getting your body much more comfortable with the delivery system and, so accept that there's going to be a training period and demand as many masks as you need to find the one that works for you.
また、CPAPには訓練期間も必要です。この期間は1ヶ月あるいは数ヶ月に及ぶ場合もあります。お子さんがCPAPを使う場合は、まず低い圧力から始めて徐々に高くしていきます。成人の患者さんに対しても同じアプローチで問題なさそうです。この期間を使って、CPAPに体を慣れさせていきます。まとめると、CPAPには訓練期間が必要であるということ、そして自分に合ったマスクを見つけるために多くのマスクを試す、ということです。
The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.
The Marfan Foundation は、当翻訳には関与しておらず、翻訳内容に関してはいかなる承認も行っておりません。このトピックに興味をお持ちの方は、Marfan.org にアクセスし、当協会の専門家から成る諮問委員会が承認した内容をご参照ください。
